Maxing Chemo

cwmcdaniel · Posted: Thu May 08, 2008 8:40 am Post subject: Maxing Chemo

Just to review my original post in February. My Brother-in-law (42) was diagnosed with GBM IV May 2007. He had surgery and the Drs removed the encapsulated tumor but could not remove the fuzzy stuff. He had the 33 treatments of chemo and radiation and was on monthly chemo treatments that change about every 2 months.

He is still working full-time however I see that he shies away from social activities. He has been on Avastin with CCNU since April 11th and finishes June 6th.

My concern is that his MRIs have shown no change since surgery. It is not growing and that we are thankful for. In my readings I see where numerous times patients stop the chemo treatements and within months the cancer mushrooms. Is this to be expected? How much chemo can a person take? I know with radiation most patients are maxed out right away.

My heart and prayers go out to all of the cancer patients and caregivers. Thank you for this forum. I have learned so much about this ugly cancer and the caring that everyone has.
_________________
Charlene

ksplat · Posted: Thu May 08, 2008 8:01 pm Post subject: Re: Maxing Chemo

Hi Charlene,
So great to hear from you again & get an update on yr BIL. It's very positive to hear that there has been no significant growth in tumour! These B------- can grow unbelievably fast. This stability in yr BIL must be attributed to the Avastin & CCNU. He also had a very successful debulking surgery & the surgeon should be acknowledged for his hand in this (pardon the pun), all in all fantastic news!
In my Bro's case he was always socialising prior to this illness but the side effects of the drugs along with the emotional drain of suffering this kind of thing has changed the outgoing, sociable person he was. We only see occasional glimpses of this now, although his sense of humour has remained intact, Thank God!
I have heard of a famous Aussie Dr who was diagnosed in Nov 06 with GBMIV. He had surgery & then a 2nd surgery in May 07 & began a 6mth course of a tri-chemo treatment. 1st 4 days of the mth on an IV chemo drug & then for the remainder of the mth 2 daily tablets of chemo (sorry don't know the names of them but thought it might be PCV?) This Dr has done so well & was in the news in Dec talking about how good he was feeling & there was no tumour visible on his latest MRI! This Dr also attributed his great outcome to complementary therapies such as naturopathy, meditation & acupuncture (I think?). He also says "there is no such thing as NO HOPE there is only HOPE", his journey has been very inspiring.
I have also heard many people say that you throw many different chemos at these BT's & keep the tumour guessing, what might work for one won't work for another. Are your BIL's Drs talking about stopping chemo altogether after he finishes his current treatment? I can understand your concern if this is the case.
My Bro was on chemo (Temodal) for 12 mths. Initially he was taking a daily dose of it for the 1st 4-5mths & then a monthly cycle of 5days on 23off. Although the tumour has grown throughout this time (he has had 4 debulking surgeries now), it is obvious the chemo has kept the tumour growing at a slower pace.
My Bro had a 2-3 mth break off Temodal & had Gliadel (chemo) wafers placed in the tumour bed in Feb. His MRI last week showed some growth but not enough to warrant a further surgery just yet. Mark has been placed back on a Temodal cycle for the next 2 mths with a follow up MRI then.
You & your family are in my prayers & thoughts.
Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman · Posted: Thu May 08, 2008 10:42 pm Post subject: Re: Maxing Chemo

Charlene, I took CCNU for 13 cycles (6 week cycles) and they wanted to give my more but my blood levels were too low and the MRI scans showed no signs of cancer. However, my cancer was a glioma grade II. I believe that just holding a grade IV in cheek is great news or at least as good as it gets.

Sorry for not being able to give you a more uplifting answer Sad

.

You and your BIL continue in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

cwmcdaniel · Posted: Fri May 09, 2008 7:34 am Post subject: Re: Maxing Chemo

Thank you both for your input. The attitude of both my BIL and Sister have amazed most people. We will never lose hope. It surrounds us in every attempt to keep this ugly disease in check.

The Drs are considering his last chemo to be in September. This will be one year after the initial chemo/radiation regime. It does scare me that it seems the cancer grows so much faster after chemo is stopped. Don't get me wrong in that I have faith that everything will be done as needed. He continues to have spells (as the Drs call it). They are not seizures but he loses control over his speech and his face will twitch. They last anywhere from 1 to 5 minutes. This happens 5 or 6 times a day and much more if he is nervous or upset.

My sister and BIL are planning a vacation this June; right after the last Avastin treatment and trip to Duke. Of course this was cleared with Duke who gave their blessings and have always encouraged them to do whatever he was up to.

As always all of you are in my thoughts and prayers.
_________________
Charlene

brainman · Posted: Fri May 09, 2008 8:37 am Post subject: Re: Maxing Chemo

Charlene, I have often told this to members... about my take on prognosis and it seems relevant to your BIL. I do like to know my prognosis but only in order to set my priorities for the things I still would like to do with whatever time I still have left within the limitations upon me. After setting those priorities, I try to just live one day at a time working to achieve those things in my "bucket list." It sounds like your sister and BIL are doing just that by taking a much needed vacation.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

cwmcdaniel · Posted: Fri May 09, 2008 9:32 am Post subject: Re: Maxing Chemo

Thanks Jim. I am with you on the prognosis. I would want to know too. They are afraid they would start counting down instead of living. I can not imagine how hard it is for my sister to live with this. I am the sister-in-law and I wake up thinking about them and go to bed thinking about them. My sister refers to me as the lead team member. Thanks to this forum I am able to pass on information as they need it. Such as the sore my BIL had in the fall that would not heal. I was able to encourage a Drs visit due to staff being an item of interest with any cancer. Surely it was serious and treated.

Again, this forum is much needed and I appreciate the attendance and sharing of information. Even when there is not a question about a particular problem but the updates so similarities can be monitored and dealt with. Prayers and hugs to all.
_________________
Charlene

KelJ · Posted: Sat May 10, 2008 8:26 am Post subject: Re: Maxing Chemo

Charlene,

I can only tell you what our standard of care is here in Nova Scotia, and then only with the chemo we've been treated with. For Temodal, we were told after 6 cycles we had the choice of continuing until the drug was ineffective. Unfortunately it seemed ineffective from the start for us so we only completed 5 cycles; however, our doctor told us that they were still treating a patient after 36 cycles.

We then moved to Vepesid (Etoposide) and have completed 4 cycles so far. Again we've been told that this will be a "keep using it until it's not working any more" timeline. Luckily for us, the drug has actually started to shrink the tumor.

I spoke with the Oncologist at length about this (specifically with Temodal) and she explained that most of the treatment lengths had started as 12 months and were then gradually reduced when it seemed to have no effect on prognosis, but with the Temodal it STARTED at 6 months and people questioned that if it worked well at 6 months, why stop it? Shouldn't 12 months give a better result? And now it seems as though they continue to treat until progression and then move to a secondary or tertiary drug regimen.

Obviously other drugs may have other timelines and when I looked online all I could find for CCNU & Avastin was for trials which ran to a maximum of 12 months, so I have no idea what the standard would be. I can tell you that the difference between radiation treatment and chemo is significant as the radiation effects on healthy tissue is cumulative and any further treatment would harm healthy tissue as well as the tumor mass. That's why they use a number of different beam directions to treat a tumor. That way the healthy tissue is only given a low dose of radiation but where the beams cross there is a higher dose, hence the beam shaping to match the tumor.

With chemo, the dosage is controlled by, among other things, how fast the body can metabolize the drug out of the system. That's why you see some drugs are give in a single day, some in a week, and some over a much longer period.

Sorry if I'm telling you what you already know, and since I can't talk specifically about your BIL's drug regimen it probably doesn't help too much either....

In any case, my thoughts are with you and your family.

Kel

cwmcdaniel · Posted: Mon May 12, 2008 7:25 am Post subject: Re: Maxing Chemo

Kel, thanks for your input. I always learn something new from all of you. I know the Drs at Duke have said they hope to be finished with all chemo in September. I am sure that will be evaluated then.

My prayers are with you all.
_________________
Charlene

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